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Pancreatitis - or not?

Posted By Mykella on February 22, 1999 at 15:06:31:

I have Transverse Myelitis since 9/95.  They think my lesion is at about T-8.
I have been unable to walk since 9/95 and have had vague stomach problems ever since.
However, in August of 98 I started having severe abdominal pain (middle upper abdomen.  I had my gallbladder
removed during an exploratory laparotomy 11/1/98.  The only thing they found during the
lap was that my stomach had lost muscle tone and there was little, if any, persitalsis.  
We assumed this was because of my TM.  Immediately following the surgery the labs showed a lipase
of 1100, which we assumed was due to the surgery.  By 11/20 my numbers had normalized;
I was started on tube feedings and sent home.
On 12/2 the pain became severe enough for me to go to the ER.  This time
it was pain in the upper abdomen, radiating to my back.  My amylase was 1200, my lipase 2100
and I was admitted for acute Pancreatitis.
After 2 weeks of bowel rest (with TPN) my numbers were still high
so they did an ERCP...the results of which were normal.  A week later, I was
still in pain and my numbers were still high, so they did a 2nd ERCP with billiary sphincterotomy.
Aside from making the pain worse for s few times, this procedure
seemed to accomplish little.  My numbers started to gradually fall
until on 1/16/99 my amylase normalized (120); my lipase was still up around 400.
I was transferred tp another hospital where the drs are now saying they do
not think I have Pancreatitis.
I still have the severe pain - upper abdomen radiating into the back, worse when I lie down (getting worse the last 4 days)...enough to force me
to take demerol.  I have nausea to the point of not being able to keep anything down.
And my lipase is still in the 400-500 range.  I am now being given the choice between being
transferred to a physical rehab center, or transferred back to the hospital I came from.
They say they do not know what is causing the pain, but they don't think it is
Pancreatitis - because my CTs have been normal.  My Gastroenterologist back home thinks I have Pancreatitis.  The drs here do not (btw, they are
general surgeons).  They say they do notknow why I have pain or why my lipase is elevated.
I don't know whether to accept this and go to rehab, or go to another hospital and keep
trying to get a diagnosis.  I am looking for ant info re TM and Pancreatitis.
I am also looking for info on CT scans and chronic Pancreatitis....does it *always* show up on a CT?  My GI dr says no, the surgeon says yes.
I have been hospitalized for 4 months now and am anxious for answers
Thank you....and I'm sorry this question wa so long!
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